Building a Legacy (While Enjoying Every Sandwich)

In the fall of 2002, the great Warren Zevon made his final appearance on The David Letterman Show before dying of malignant mesothelioma, a rare and deadly form of lung cancer.

When asked by Letterman if his terminal diagnosis had changed anything about the way he looked at life and death, Zevon replied, “How much you’re supposed to enjoy every sandwich.”

I remember well that interview from 13+ years ago. Zevon’s answer resonated with me then, and resonates especially so with me now, obvs.

As you can imagine, being advised to get one’s affairs in order and being given an expiration date on one’s life span is a somewhat jarring reminder to live in the moment. I’ve written before (and will continue to do so), about the virtues of getting a head’s up that you might be approaching the end of the line. To say such a wake-up call is a blessing would be an understatement.

Since my initial diagnosis in December 2011, five days after the birth of our daughter by unplanned C-section, I’ve been lauded by some and likely judged by others for being “so open” about my disease and what my family and I are going through. I might even be in the latter group myself if I weren’t living it from the other side.

Since my most recent “upgraded” diagnosis, I’ve been talking with palliative care and child behavioral specialists about “legacy building” for my daughter. And I have to say it is a relief to know there are many, many things I can do to ensure my daughter really gets to know me, even if I were to die before she is old enough to have formed many solid memories. And as I go through this process, facing a new and more formidable disease, I realize I have been legacy building all along.

When my daughter was but a newborn, my husband set up a Facebook account for her. And if either of us posted on social media anything remotely to do with our daughter or our family or our life together, we tagged her (and still do). We’ve been very cognizant of the fact the Internet will likely live forever, and that one day (probably sooner than we think), our daughter will be able to go back and look at posts on the social graph dating back to when her very existence in utero was first known (and years beyond that if she’s curious).

Can you imagine being able to read real time accountings of your parents’ pregnancy with you, as well as the reactions of their friends and family to it? How cool would that be? Well, our children and our children’s children will find out … some of them already have.

And with our daughter, since her birth is what led to the discovery of her mom’s cancer, she will also be able to read and see real time accountings of her mom’s treatment, and all of the ups and downs that followed.

I actually started blogging for this very reason … yes, me, someone who once purchased a t-shirt that said “No One Cares About Your Blog” … so my daughter could know me and my perspective on this journey in the event I wasn’t able to tell her in person. It’s very much like keeping a journal, knowing your writings will live on forever for your children to one day read.

All of us are doing it really, building a legacy for future generations. Perhaps I’m just doing it more deliberately, given my particular circumstances. But in truth, all of us are terminal. Life is a terminal condition. Most of us just don’t have the benefit of knowing how, when, or why we’ll meet our demise. (Not that I know the answers to these questions either. I could die tomorrow by being hit by a bus for all I know.)

So, I’ve been doing this – legacy building – for the past three and a half years. But I would be lying if I said this time around didn’t feel differently. It is very different. One way, of course, is that I’ve been told my disease has taken an unexpected and deadly turn. I’ve been told I’m not likely to survive this. I’ve been told I might not live to see my three and a half year old turn four.

That’s something that’s different this time around, something that’s new. And not just the diagnosis … it’s what feels different inside of me. Before when I got my original diagnosis, I truly never even entertained the thought I might not make it. Now … the thought that I may not make it … is entertaining me. The little reptilian voice has cropped up in the back of my head, that voice that whispers sinisterly, “you know, Joanna, you could actually die from this,” has become more difficult to ignore. And sometimes, in the dark of night, when the scary stories you tell yourself seem the most real, I can’t ignore it at all.

This time, fear is in the house. That’s what’s different.

Fortunately, after the initial “adjustment disorder” phase passed … that period of time one typically needs to adjust to difficult news … I was able to look at the situation more objectively. And hope is now crowding out the fear, thank goodness. Hope is a much better roommate than fear, especially when we’re talking about sharing the same headspace.

In my last post, I talked about some potentially promising options. At the time of that writing about ten days ago, there were many pieces and parts still up in the air, and we were being careful to manage our expectations. I’m now pleased to report that those pieces and parts have been falling nicely into place. So far I’ve passed with flying colors all necessary tests and scans and exams that could determine my eligibility for treatment of the brain cancer. I don’t want to jinx anything by saying this prematurely, but, barring any unforeseen circumstances this week, it appears as though I’ll be having surgery at the end of this week to install what is essentially a port into my brain. It is through this port I will ultimately receive chemotherapy for the brain cancer (specifically the leptomeningeal carcinomatosis). And soon thereafter, I’ll resume the (now FDA-approved PARP inhibitor) oral chemotherapy for the belly cancer.

See? Hope.

And for those (humbling many) who ask what they can do to help our family, we continue to ask for positive energy. Our most fervent prayers to the universe are that: I stay well enough to get me to my surgery date without having to postpone the procedure; that the (pretty routine, low-risk) procedure goes off without a hitch, that my badass neurosurgeon and his team are on their best game; that I recover quickly and handily from the procedure so I can start the chemo to the brain as soon as possible thereafter; and that I’m the same wife, mom, daughter and friend after the surgery as before. And of course, as a bonus only, that I can rock one of these Ommaya Reservoir ports in the head as well as Damon Wayons rocked his tiny side berets on the old In Living Color skit “Men On Film”.

And talk about enjoying every sandwich? Check out the tasty morsels at the top of my list:

You can’t get any tastier than that. I give them 2 snaps and then some.

22 Thoughts on “Building a Legacy (While Enjoying Every Sandwich)”

The idea of your child knowing you, the real you and not the ‘mom you’ is a beautiful plan that I love. I can see the two of you reading through those posts, years from now, and laughing hysterically. Prayers from all of us.

In my younger days I often heard “Life is what you make of it.” Not just 1 day of living but every day. You are doing that and your blog has helped me to let go and live every day not just a few. So proud of the little girl I use to hear giggling when playing with Lisa. You are a beautiful woman inside and out. I know you will make the best of each day every day.

I haven’t met you but I feel I know you Joanna. Between your dad’s updates (Art is a very special person to me) and your blogs, I am willingly, and honored to be, a part of your team. Each morning my prayer time starts with prayers for my family, and then you, Joanna, and your family are always next. This has continued each day since Art made me aware of your December 2011 diagnosis. I pray God to continue to intervene in every little thing. Thank you for your blog updates so I know exactly where to focus my prayers Joanna. I walked the path that your daughter is walking – with my dad at her exact age for the same reason. He owned a newspaper and was the Editor as well. His articles about his family are incredibly treasured today. I was the youngest of 5 boys – he referred to us as numbers in his articles. I was always #5. May God continue to be with you and your incredible family each day! I love your Hope premise – Hope does not disappoint us… (Rom. 5:5)

We have not met but I have followed your story since I met Mark in Leadership Nashville. I have to say that medical science is amazing but your spirit is even more so. Together they make an incredible combination. I send you positive energy and lots of prayers.

Pamela Johnson, above already said what was in my heart to say to you, Joanna–except that i know Mark through IBMA/ Leadership Bluegrass, as well as Leadership Music. I’m praying and hoping the best for you and your beautiful family. Every day.

I live by ‘enjoy every sandwich’ but I can take it too far sometimes and end up a bit fat. I pray for you every day – we have some mutual friends I am very close to that know you-I have been visualizing your head and pouring light into your brain – I think it’s working – plus a lot of Hail Marys too. I’m following this amazing journey Joanna . Good luck xxSiobhan Kennedy

I send you so much love..hope..with tears of humility..I can only say I thankyou for sharing..and the prayers and positive hope and love i am sending..to you and your beautiful family could not be more heartfelt..as your words have touched me so much to the core of..yes i connect on mutual survivor level..but not ever at this point could i even know or say I understand..how you have shown me Grace and how it looks when strength and courage,,and inspiration has started you straight in the face..that is what you have done for me..I thankyou for sharing..i will be praying and not forgetting whom and why. I have seen your beautiful face amongst the ones at survivorville which sadly i have continuously tried and failed to make it..lest i know we would of def shared a big hug..you are beautiful.and inspirational for me..at this very moment..I only have love and hope..and thanks for helping through your sharing..your story and your words..which i will keep and treasure as you continue your journey..Blessings and love..xox

Joanna, I’ve always loved you. The cool upper classmate at my art table. My favorite class with some of my favorite people. You are so eloquent and beautiful and every single day I think about you, I ask My Lord to comfort you. I just don’t even think you realize how many people you are inspiring with your “raw talk” (for lack of a better term)….you are a true wonder woman <3

Joanna , this is Norma again from Chicago . I received an email from Lynda Roberts . I’m praying for you and sending you positive energy filled with healing hope. My husband ,John lost his mother when he was four years old . The people around him did not keep her memory alive. He is now 62 and has suffered a recent stroke. He is in such despair over his inability to recall even the smallest detail about his mother . You are so wise to create this legacy for your daughter Maggie. Through you she will come to know herself ; the most important gift of all . Grace and Blessings To You, Norma

I have followed your journey since your very first post…which I just stumbled upon by accident one day. You have inspired me, humbled me and touched my heart. There are many of us out here sending you quiet prayers of hope. You have a beautiful life, filled with love – and I can see that it starts with you….because what you put out is what you give back. Please know that we are thinking of you every day and hoping for good results.